Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care

Abstract

Background Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. Methods As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital’s pediatric palliative care service. The semistructured interviews focused on “decision making for your child”; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. Results Four dominant interrelated themes permeated parents’ discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents’ effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child’s best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. Conclusions Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.

Good-Parent Beliefs of Parents of Seriously Ill Children

“…Previous studies 11,18 of good-parent beliefs have been conducted with parents of children with terminal cancer using open-ended interview questions and with parents of children receiving palliative care using semistructured interview questions, 19 providing a grounding for the good-parent attributes used in the present study. A previous study 36 implemented this discrete-choice methodology to assess 43 parents of patients in a pediatric intensive care unit.…”

“…Such self-defined views may provide parents with orientation and goals for decision making while helping them grapple with feelings of personal accountability. 19 …”

Moral Stress, Moral Practice, and Ethical Climate in Community-Based Drug-Use Research: Views From the Front Line

“…The themes expressed in focus groups led us to the moral distress and work-related moral stress literature, which has been almost exclusively studied within the context of nursing, medicine, and humanitarian work (Austin et al 2007; Corley 2002; Hamric, Borchers, and Epstein 2012; Nilsson et al 2011). Moral distress, first described by Jameton (1984), occurs “when one knows the right thing to do, but institutional constraints makes it nearly impossible to pursue the right course of action” (6).…”

“…Jameton’s (1984) construct of moral distress also included how the moral conflict created by recognition of institutional constraints resulted in frustration, anger, and anxiety. Subsequent research has demonstrated associations between moral distress and job burnout, emotional exhaustion, and job cynicism (Hamric and Blackhall 2007; Hamric et al 2012; Joseph and Deshpande 1997; Maslach 2003; Schluter et al 2008; Ulrich et al 2007; Webster and Baylis 2000). Drawing on later work emphasizing the psychological disequilibrium aspects of Jameton’s theory (Wilkinson 1988; Zuzelo 2007), Lutzen and colleagues (2010) developed the Work-Related Moral Distress Questionnaire, which includes items describing both work-related moral conflicts and psychological reactions of practicing nurses.…”

“…Organizational ethics climate is a subset of this general perception and involves how the organization is perceived to address ethical issues and allow employees to engage in ethical reflection (Brown 1990). Ethics climate has been linked with moral distress and work-related moral stress among nurses (Hamric, Borchers, and Epstein 2012; Hart 2005; Lutzen et al 2010; Olson 1998; Pauly et al 2009; Zuzelo 2007). Qualitative studies involving community-based research workers conducting a broad range of studies suggest that lack of organizational ethics training and support may be similarly associated with work-related moral stress among front-line drug-use research staff members (Alexander and Richman 2008; Richman, Alexander, and True 2012; Sunderland et al 2011; Terpstra et al 2011; True, Alexander, and Richman 2011).…”